It's Easter Sunday here, and I am manfully, or womanfully, trying to forgive and forget in true Christian spirit. There are all sorts of people I need to forgive but let's start with my husband bringing home HomeBrand (unbranded, like Tesco Value) from the supermarket yesterday. To be honest, I am struggling. There is Christian tolerance but there are limits.
We've just had our Easter egg hunt, the annual confirmation that if developmental milestones were measured in ability to hunt down chocolate, our boys would be not just discharged from the paediatrician's care but possibly enrolled in a Gifted and Talented cohort study. There is something wonderful about small nappy-clad children wandering around a garden shouting "Egg! An egg!" and waving sticky, foil-covered fingers at you. Mumsnet, I note, is this year filled with parents insisting that their children only NEED one bite of chocolate, the rest of the Easter spirit joylessly supplied with one knitted egg from Traidcraft or whatever. In further evidence of my Christian backsliding, I believe that Easter is about fun first and restraint second. We supply plentiful eggs in this house, and then if they aren't used up in a few days I make chocolate cornflake crunch with the leftovers. (Again, I realise, it is one of the benefits of children with SN. You stop worrying about the possible moral connotations of too much chocolate and just enjoy the fact that they have ALL understood the idea of finding stuff in the garden, and that no one has wandered in having eaten cat poo by mistake. Although given my husband's clear lack of taste in tea, perhaps I should not be so sanguine, for all I know he might have mistaken weedkiller for chocolate this year).
It's been a complicated week. My eldest had his IEP on Monday - which was a bit alarming, as he has been so happy and settled I was expecting good reports all the way. They were lovely, and all agreed he was lovely - which he is, like a great big cuddly talkative teddybear - but suggested we revisit the whole ADHD question.
This should not have shocked me as much as it did. In realistic terms, I could not have been more prepared. At our last paediatric meeting before leaving England, the paediatrian sighed at the fact he had been discharged from ADHD clinic without diagnosis and asked me please, please, please, to get this reinvestigated when we arrived in New Zealand. So this should have been a gift, but in fact it was a blow in the stomach, because I had been rather hoping we'd dodged that bullet and that his issues had magically improved. (I am not immune from the parental disease of denial). I was astonished at how low I felt. I thought I was past that dreadful diagnosis-shock, I complained to a couple of friends. But of course, as they pointed out, every new diagnosis is about going back to the beginning, revisiting your view of what the child needs and what strategies are going to help.
Which brings me to the big bad elephant in the corner: Ritalin. As it happens, I am pretty sure my son won't need it. He is happy, he is learning, and we are managing him well enough at home. No reason to put him on Ritalin that I can see, and school agree. Diagnosis, if it happens, will be about strategies, support, qualifying him for extra help. But I've been shocked by the number of people who have said to me, as soon as I have mentioned that yet again ADHD is a possible diagnosis "But my God! What are you going to DO? You're not going to medicate! I mean, Ritalin is a DRUG!" as if I had proposed to throw my son off a cliff. Even more judgemental than those who don't want their children having a morsel of Easter chocolate this year.
Ritalin is what it is. We all know it's a drug, it's not ideal, it's the last resort, messing with a young child's brain chemistry at an age when they are unable to give consent, yadayada. But I would do it in a heartbeat if I thought my other children were at risk, his education was being destroyed by his behaviour, or I felt he was not safe to keep at home. I would do it because I believe foster care and illiteracy are known harms. Ritalin is a potential one. As a parent, you have to weigh up the pros and cons. There are of course cons to Ritalin, big ones. I am sure that in the States in particular it is often overprescribed, a first resort rather than a last. Even in the UK, Ritalin is too often prescribed BEFORE the serious behavioural therapy that the National Institute of Clinical Excellence recommends, you know, the type that is underfunded and completely lacking in most areas. So my ideal prescription for these kids would be more behavioural therapy.
But the parents I have known who use it, by and large, aren't idiots. Most have tried other strategies, seen them fail. The doctors who prescribe Ritalin aren't doing it for fun, or because they haven't noticed that it's a drug. They're doing it because they have taken a pragmatic decision that the known harms of violence and despair and failure outweigh the potential harm, longterm, of a still-new drug.
They may be wrong. Who knows? But I am not going to judge any parent who has taken a deep breath and said, at the end of a long battle with the alternatives, "actually, yes, medication may be what my kid needs." The people who "don't believe in ADHD" tend not to know what they are talking about. I know that, because I used to be one of them. Working with American schoolkids as a tourguide, I was horrified to see these really bright kids with a diagnosis. But they were so intelligent, I would say. They were the interesting ones. How could THEY be a problem? Of course, I was childless and cocksure. I didn't have the responsibility of raising them, I didn't see what they were like in the routine of a classroom as opposed to on the European trip of a lifetime. So this possible ADHD diagnosis is a bit like karma, if us Christians believed in karma, or divine judgement, if us Christian liberals believed in God sending us nasty surprises just to give us a fright. I guess what I should call it is "awkward." So you know, I have suspended my previously firm belief that medication was always, in every situation, a bad idea. I have looked at the evidence, of the families I know, and seen the mums at their wits end - often on medication in order to cope - the dads who leave, or take medication in order to cope - the kids who are beaten up, because every single sensible parenting strategy has failed, and even decent parents get to the end of their tether and lash out - and I try to take a rounded view.
And you know what I have learnt, talking to real parents who have used it? Responsible parents don't try Ritalin without having given EVERYTHING else a good shot first. Moreover, many of them don't want to drug their kid indefinitely. Which is great, because for short-term use it can be transformative. Ritalin doesn't have to be a lifetime sentence. From the cases I know, it can be the opposite. It can be about giving a kid a short-term boost, allowing them the breathing space to learn the behavioural strategies to manage longterm. And it can sometimes save a parent's sanity, or a sibling's emotional health, or a marriage. In short, in small doses Ritalin can be a godsend. Like chocolate at Easter.
Of course, some marriage-threatening problems can't be solved by medication. Sadly for our marriage, I know of no pharmaceutical preparation which would cure my husband's taste for revolting tea.
Saturday, April 7, 2012
Saturday, March 31, 2012
Sending Excrement to Australia: "You need to take out a second mortgage"
There's no such thing as a free lunch, I mean weekend away. Don't get me wrong, I'm very glad we accepted the invitation to two nights' hotel accommodation and a seminar presentation on therapeutic approaches to autism. I mean, it was two kid-free nights. Plus, I have learnt absolutely loads about alternative approaches to treating autism. It's been an absolute eye-opener. A real revelation. For the first time I know the value of these treatments. So much so that I will probably never bother attending ever again. And I certainly won't be following their financial advice.
The warning signals came as soon as we checked in to the hotel. The organiser, an eminent dietician at whose feet the gluten-free families of our city worship, turned out to be very overweight. Look I'm a bit podgy myself but I'm not trying to make a living out of controlling other people's diet. "Hi, thank you for the advice about GFCF, have you ever heard of an amazing thing called calorie and portion control?" Secondly, when we arrived back from dinner she was standing outside our hotel room talking in a loud voice. She moved to let us past, saw us go inside and then continued to talk for..ooh, another hour or so. Her magic diet clearly doesn't teach social sensitivity.
I'm going to not follow the example of the conference, and present a balanced view. I have a fairly open mind about dietary treatment. I have a friend whose autistic children suddenly became verbal (aged five and six) after going gluten-free. Their behaviour improved too. She's not mad, she's intelligently sceptical, so I reckon she's telling the truth, especially as her kids then tested highly, exceptionally highly, intolerant of gluten. Which is the crucial factor. They were gluten-intolerant, in a way that could be scientifically measured. So gluten-free, for me, is one of those powerful therapies which make a big difference for SOME autistic children. But not all of them. Reputable surveys such as CS Kira's work on autism spectrum disorders state that a significant propertion of parents experience NO benefit from these diets, and that there is only a marginal difference between those who say GFCF helped their kids, and those who claim the same result from cutting out chocolate. You know what, cutting out chocolate is less hassle (well, unless the diet needs Mum to follow suit). In other words, the scientific evidence isn't there. Autism takes many forms and I am very comfortable with the notion that some kids respond to diet. Many aren't.
So, what I expected this weekend was a cautiously positive look at the field of biomedical supplementation and dietary management. Because this is stuff that really can help some children. Don't get your hopes up, it's not like we're looking for a cure or anything, but, you know, this works for some kids. Worth a shot. So I sat there, pen poised, interested and alert. We start with some scientific evidence about mercury and autism rates, plus zinc and magnesium lack in kids with ASD. Ooh, scientific rigour. Count me in.
Oh, but hang on. The speaker is taking a different tack. Autism CAN be cured after all. With her help. Amazing stuff. A lot of people who come to these specialists directly after receiving their diagnosis put them on gluten-free, dairy-free diets and the kids learn to talk and interact. Wow. Except that, you know, an awful lot of autistic kids DO learn to talk between the ages of three and five, without changing their diet in the slightest, or taking any of these fancy supplements the speakers are going on about. It's called development.
Things get woollier. To applause and appreciative gasps, we hear how Case Study A started to sleep after starting on the biomedical dietary regime. But hang on, you said you prescribed melatonin. That normally nails sleep problems, whether or not you ban bread and cheese as a midnight snack. Plus, I can't help but notice that as we stop talking about mineral deficiencies and start discussing expensive medications, then suddenly the all the heavy-duty science drops away. There is no data to back up these amazing results, no trials demonstrating the difference supplements or gluten-casein-free made to a set of children. It's all a bit nebulous. "It is IMPERATIVE that you do gluten and dairy free for your child," bellows the naturepath. Really? Without any evidence? You just want us to BELIEVE you because you are speaking emphatically and with a sense of conviction? Like all the worst sermon-writers, you are bossing us around without explaining WHY. It all starts to feel familiar, like being back in church. They show us a picture of an oxygen tank. It will be REALLY good for our children to spend time inside this, we are told. Why? Are we sending them to the moon?
Hey, well, it's harmless stuff, I think, shifting in my seat and biting into one of the free gluten-free snack bars we have been given. My word it tastes revolting. Pretty packaging, though. This is all relatively cheap, right? I mean, if I wanted to change my kids' diets I could just do it, no bread, more rice. Hold on, what's the speaker saying "We encourage parents to do whatever it takes, borrow from their parents, say to people they don't want birthday or Christmas presents, they just want money, take out a second mortgage. Because this is so important to our kids." No. I can't have heard that. The biomedical woman didn't just stand up and say "Take out a second mortgage so you can afford me." Oh my word she did. The brazen cheek of it. For what essentially amounts to some expensive vitamin pills. Suddenly we are on Planet Rip-Off. (Maybe that's why we needed the oxygen tank). I have a revolting taste in my mouth, and it ain't the snack bar.
Whilst I am reeling, we explore Planet Rip-Off a bit further. Amazingly, we should change our diet and take extra expensive supplements rather than Anti-Depressants. (Rather patronisingly, the speaker assumes most of us are on them already because, you know, raising autistic kids is HAARRRD). She explains about all the secret scientific and medical evidence on SSRIs. Apparently, the evidence all shows that SSRIs are a placebo but this has been suppressed because the medical journals will only publish what the drug companies want. Hmm, or possibly the medical journals didn't publish the evidence because it was BAD SCIENCE and didn't meet PEER REVIEW standards for publication. I feel slightly sick at the misleading flim-flam, designed to wean vulnerable women off reputable medication and onto untested supplements.
So I am relieved when the next speaker is introduced. Back to earth. Oh, this will be good, no-nonsense stuff. Chiropractic care has been very helpful to me when I have had lower back pain. She is smily and upbeat with a disabled child of her own. Lovely, heartwarming stuff. Oh, the child is doing really well. Amazing. It's all down to her regular spinal readjustments. This time I am sufficiently peturbed to ask an actual question. Excuse me, I say, many children with her disability do very very well. Is this just one of the children at the high-functioning end of the spectrum for her specific disability, or is she actually showing unusual developmental features? "Oh, she can write. She should have trouble writing." Yeah, but lots of children with her disability have learnt to write. Some take school exams and pass them. Some go to college. "She's such a delight and a blessing." Yes, and so are my children. Even without the constant spinal readjustments. "We need to focus on not doing but being. Enjoying our children in the now." Yeah, too right. I'm gonna focus on not doing chiropractic care.
The day gets more surreal. We do a quiz, and it becomes clear that more than half of the audience are already "doing" the gluten-free, casein-free, supplement-intensive thing. So why are they here? No wonder they are nodding vigorously. They've all signed up, taken out their second mortgages. It all starts to feel very church-like. Preaching to the converted. But they are all so happy and friendly. They BELIEVE, whereas I am scowling in a corner, demanding that we look at the evidence. I feel guilty for my suspicious mind, like a Biblical scholar visiting a convent.
Dutifully, I take notes, and try to pull out the sensible suggestions from the expensive murk. I'm going to get my children's blood tested (free, by the GP) for vitamin and mineral deficiencies. I'm going to find out whether we can get children's dosage of pine bark extract (which has tested in one study as as effective as Ritalin for hyperactivity) here in NZ, and possibly trial it on one of my sons. I also get a possible answer to one of the mysteries that has bugged me as regards my younger two: why their terrible, chronic diarrhoea has largely cleared up the second I cut back on fruit. (I did this because we were skint, and this was a welcome side-effect). It is quite possible that they have some yeast or bacterial development in their gut that may be producing unhealthy bacteria that was messing them up inside. Only thing is, to test this hypothesis according to the doctors here, I would need to send their faeces to an Australian lab. My husband is quite keen on sending faeces to Australia but would rather it went to one of the rival rugby league players that thrashed his team last night. It would cost thousands. For a therapy that will amount to "take probiotics and cut back on fruit."
And that is what leaves me livid. It isn't expensive to tell parents to try gluten-casein-free diets. Iron, vitamin and mineral blood tests are free. Even the fancy stuff, like pine bark whatdoyoucallit, will cost me about thirty US dollars. When you strip away the mumbo-jumbo, what you have is a simple diet and some UNTESTED or UNPROVEN suggestions for minerals and vitamins that may or may not help our kids (Kira's data suggests that most of them don't, most of the time, but it's worth a multivitamin or two to cover our bases). Why the hell have they seriously recommended we consider a second mortgage? Where are these exorbitant expenses going to come in? Their "consultancy" and "tests," of course. I can't help but feel that the rather porky nutritional expert is eating too many pies at her clients' expense.
I am not averse to spending big money on my children. I don't have a job, because right now they need me. We nearly bankrupted ourselves and made the mortgage broker's eyes water by insisting that only this house would do, the one with four bedrooms on one level so that we could all keep safe and the children would stop hurting themselves and each other at night. Ditto the people-carrier, so that they would stop hurting each other whenever we drove. I sold my christening gold coin to pay for a course of therapy when it became clear that one child needed it. I have twice paid eye-watering sums to a London consultant to ensure that my sons were assessed by someone who knew her job. I have bought sensory equipment, paid for unnecessary childcare so my sons could have the sense of a social life. I booked a therapist for my youngest here when we weren't even sure we would be able to pay the mortgage. There were the drum lessons in England, to stop self-harming. The years of private speech therapy, at sixty quid an hour. I grimly go on paying for expensive private swimming lessons because it is clear that even if they aren't going to work, my boys ain't gonna learn to swim any other way. Packed lunches are full of expensive ingredients that are all my boys will tolerate. So yeah, I know about spending money on their needs that my friends get to spend on fun.
But there are limits. A second mortgage, to pay for vitamins? Send my son's shit to Australia to be tested? Isn't there an adequate supply of Australian bullshit already? Their recommendations remind me of the gluten-free snack bar, pretty on the outside but bitter to the taste. When I come home, I research the scientific evidence that we were shown, and discover that even that was misleading and partial. Unless of course the entire autism research industry is engaged in a massive cover-up, as with the medical journals' refusal to condemn SSRIs. Given the amount of money that they are asking, this stuff isn't just misleading, it's dangerous. "I do a sliding scale of payments," one of the speakers assures us. Really? I think. I've just slid right off the end.
I must have looked fairly sceptical because at the end of the day they mysteriously missed me out from the feedback sheets that were passed around. I imagine filling one in. "Stop trying to rob people. Don't use conspiracy theories to sell products. And hey, whilst we're at it, don't talk loudly outside people's hotel rooms late at night."
The warning signals came as soon as we checked in to the hotel. The organiser, an eminent dietician at whose feet the gluten-free families of our city worship, turned out to be very overweight. Look I'm a bit podgy myself but I'm not trying to make a living out of controlling other people's diet. "Hi, thank you for the advice about GFCF, have you ever heard of an amazing thing called calorie and portion control?" Secondly, when we arrived back from dinner she was standing outside our hotel room talking in a loud voice. She moved to let us past, saw us go inside and then continued to talk for..ooh, another hour or so. Her magic diet clearly doesn't teach social sensitivity.
I'm going to not follow the example of the conference, and present a balanced view. I have a fairly open mind about dietary treatment. I have a friend whose autistic children suddenly became verbal (aged five and six) after going gluten-free. Their behaviour improved too. She's not mad, she's intelligently sceptical, so I reckon she's telling the truth, especially as her kids then tested highly, exceptionally highly, intolerant of gluten. Which is the crucial factor. They were gluten-intolerant, in a way that could be scientifically measured. So gluten-free, for me, is one of those powerful therapies which make a big difference for SOME autistic children. But not all of them. Reputable surveys such as CS Kira's work on autism spectrum disorders state that a significant propertion of parents experience NO benefit from these diets, and that there is only a marginal difference between those who say GFCF helped their kids, and those who claim the same result from cutting out chocolate. You know what, cutting out chocolate is less hassle (well, unless the diet needs Mum to follow suit). In other words, the scientific evidence isn't there. Autism takes many forms and I am very comfortable with the notion that some kids respond to diet. Many aren't.
So, what I expected this weekend was a cautiously positive look at the field of biomedical supplementation and dietary management. Because this is stuff that really can help some children. Don't get your hopes up, it's not like we're looking for a cure or anything, but, you know, this works for some kids. Worth a shot. So I sat there, pen poised, interested and alert. We start with some scientific evidence about mercury and autism rates, plus zinc and magnesium lack in kids with ASD. Ooh, scientific rigour. Count me in.
Oh, but hang on. The speaker is taking a different tack. Autism CAN be cured after all. With her help. Amazing stuff. A lot of people who come to these specialists directly after receiving their diagnosis put them on gluten-free, dairy-free diets and the kids learn to talk and interact. Wow. Except that, you know, an awful lot of autistic kids DO learn to talk between the ages of three and five, without changing their diet in the slightest, or taking any of these fancy supplements the speakers are going on about. It's called development.
Things get woollier. To applause and appreciative gasps, we hear how Case Study A started to sleep after starting on the biomedical dietary regime. But hang on, you said you prescribed melatonin. That normally nails sleep problems, whether or not you ban bread and cheese as a midnight snack. Plus, I can't help but notice that as we stop talking about mineral deficiencies and start discussing expensive medications, then suddenly the all the heavy-duty science drops away. There is no data to back up these amazing results, no trials demonstrating the difference supplements or gluten-casein-free made to a set of children. It's all a bit nebulous. "It is IMPERATIVE that you do gluten and dairy free for your child," bellows the naturepath. Really? Without any evidence? You just want us to BELIEVE you because you are speaking emphatically and with a sense of conviction? Like all the worst sermon-writers, you are bossing us around without explaining WHY. It all starts to feel familiar, like being back in church. They show us a picture of an oxygen tank. It will be REALLY good for our children to spend time inside this, we are told. Why? Are we sending them to the moon?
Hey, well, it's harmless stuff, I think, shifting in my seat and biting into one of the free gluten-free snack bars we have been given. My word it tastes revolting. Pretty packaging, though. This is all relatively cheap, right? I mean, if I wanted to change my kids' diets I could just do it, no bread, more rice. Hold on, what's the speaker saying "We encourage parents to do whatever it takes, borrow from their parents, say to people they don't want birthday or Christmas presents, they just want money, take out a second mortgage. Because this is so important to our kids." No. I can't have heard that. The biomedical woman didn't just stand up and say "Take out a second mortgage so you can afford me." Oh my word she did. The brazen cheek of it. For what essentially amounts to some expensive vitamin pills. Suddenly we are on Planet Rip-Off. (Maybe that's why we needed the oxygen tank). I have a revolting taste in my mouth, and it ain't the snack bar.
Whilst I am reeling, we explore Planet Rip-Off a bit further. Amazingly, we should change our diet and take extra expensive supplements rather than Anti-Depressants. (Rather patronisingly, the speaker assumes most of us are on them already because, you know, raising autistic kids is HAARRRD). She explains about all the secret scientific and medical evidence on SSRIs. Apparently, the evidence all shows that SSRIs are a placebo but this has been suppressed because the medical journals will only publish what the drug companies want. Hmm, or possibly the medical journals didn't publish the evidence because it was BAD SCIENCE and didn't meet PEER REVIEW standards for publication. I feel slightly sick at the misleading flim-flam, designed to wean vulnerable women off reputable medication and onto untested supplements.
So I am relieved when the next speaker is introduced. Back to earth. Oh, this will be good, no-nonsense stuff. Chiropractic care has been very helpful to me when I have had lower back pain. She is smily and upbeat with a disabled child of her own. Lovely, heartwarming stuff. Oh, the child is doing really well. Amazing. It's all down to her regular spinal readjustments. This time I am sufficiently peturbed to ask an actual question. Excuse me, I say, many children with her disability do very very well. Is this just one of the children at the high-functioning end of the spectrum for her specific disability, or is she actually showing unusual developmental features? "Oh, she can write. She should have trouble writing." Yeah, but lots of children with her disability have learnt to write. Some take school exams and pass them. Some go to college. "She's such a delight and a blessing." Yes, and so are my children. Even without the constant spinal readjustments. "We need to focus on not doing but being. Enjoying our children in the now." Yeah, too right. I'm gonna focus on not doing chiropractic care.
The day gets more surreal. We do a quiz, and it becomes clear that more than half of the audience are already "doing" the gluten-free, casein-free, supplement-intensive thing. So why are they here? No wonder they are nodding vigorously. They've all signed up, taken out their second mortgages. It all starts to feel very church-like. Preaching to the converted. But they are all so happy and friendly. They BELIEVE, whereas I am scowling in a corner, demanding that we look at the evidence. I feel guilty for my suspicious mind, like a Biblical scholar visiting a convent.
Dutifully, I take notes, and try to pull out the sensible suggestions from the expensive murk. I'm going to get my children's blood tested (free, by the GP) for vitamin and mineral deficiencies. I'm going to find out whether we can get children's dosage of pine bark extract (which has tested in one study as as effective as Ritalin for hyperactivity) here in NZ, and possibly trial it on one of my sons. I also get a possible answer to one of the mysteries that has bugged me as regards my younger two: why their terrible, chronic diarrhoea has largely cleared up the second I cut back on fruit. (I did this because we were skint, and this was a welcome side-effect). It is quite possible that they have some yeast or bacterial development in their gut that may be producing unhealthy bacteria that was messing them up inside. Only thing is, to test this hypothesis according to the doctors here, I would need to send their faeces to an Australian lab. My husband is quite keen on sending faeces to Australia but would rather it went to one of the rival rugby league players that thrashed his team last night. It would cost thousands. For a therapy that will amount to "take probiotics and cut back on fruit."
And that is what leaves me livid. It isn't expensive to tell parents to try gluten-casein-free diets. Iron, vitamin and mineral blood tests are free. Even the fancy stuff, like pine bark whatdoyoucallit, will cost me about thirty US dollars. When you strip away the mumbo-jumbo, what you have is a simple diet and some UNTESTED or UNPROVEN suggestions for minerals and vitamins that may or may not help our kids (Kira's data suggests that most of them don't, most of the time, but it's worth a multivitamin or two to cover our bases). Why the hell have they seriously recommended we consider a second mortgage? Where are these exorbitant expenses going to come in? Their "consultancy" and "tests," of course. I can't help but feel that the rather porky nutritional expert is eating too many pies at her clients' expense.
I am not averse to spending big money on my children. I don't have a job, because right now they need me. We nearly bankrupted ourselves and made the mortgage broker's eyes water by insisting that only this house would do, the one with four bedrooms on one level so that we could all keep safe and the children would stop hurting themselves and each other at night. Ditto the people-carrier, so that they would stop hurting each other whenever we drove. I sold my christening gold coin to pay for a course of therapy when it became clear that one child needed it. I have twice paid eye-watering sums to a London consultant to ensure that my sons were assessed by someone who knew her job. I have bought sensory equipment, paid for unnecessary childcare so my sons could have the sense of a social life. I booked a therapist for my youngest here when we weren't even sure we would be able to pay the mortgage. There were the drum lessons in England, to stop self-harming. The years of private speech therapy, at sixty quid an hour. I grimly go on paying for expensive private swimming lessons because it is clear that even if they aren't going to work, my boys ain't gonna learn to swim any other way. Packed lunches are full of expensive ingredients that are all my boys will tolerate. So yeah, I know about spending money on their needs that my friends get to spend on fun.
But there are limits. A second mortgage, to pay for vitamins? Send my son's shit to Australia to be tested? Isn't there an adequate supply of Australian bullshit already? Their recommendations remind me of the gluten-free snack bar, pretty on the outside but bitter to the taste. When I come home, I research the scientific evidence that we were shown, and discover that even that was misleading and partial. Unless of course the entire autism research industry is engaged in a massive cover-up, as with the medical journals' refusal to condemn SSRIs. Given the amount of money that they are asking, this stuff isn't just misleading, it's dangerous. "I do a sliding scale of payments," one of the speakers assures us. Really? I think. I've just slid right off the end.
I must have looked fairly sceptical because at the end of the day they mysteriously missed me out from the feedback sheets that were passed around. I imagine filling one in. "Stop trying to rob people. Don't use conspiracy theories to sell products. And hey, whilst we're at it, don't talk loudly outside people's hotel rooms late at night."
Wednesday, March 28, 2012
My shameful secret
Don't tell anyone, obviously, but I have a secret I need to share. (That's what the internet is for, innit?) I actually rather like...(deep breath)...visiting shopping malls with my sons.
As a good liberal Christian, a hatred of shopping malls is practically an article of faith. I have lost count of the number of sermons I have heard filled with descriptions of these evil "secular cathedrals" "cathedrals to consumerism" "monuments to materialism" "Temple of Mammon" and other handy tropes. Jesus, I have been reliably assured on numerous ecclesiastical occasions, would be berating the poor till assistants in Farmers and the Warehouse, overturning their cash machines and laying about with a whip of cords, before nipping down to the local supermarket to do the same. I have tended to notice that women vicars very rarely preach this kind of sermon. This is probably because they are too busy, what with having to get the family shopping done on a tight schedule, unlike the male vicars of old who could afford the luxury of waxing lyrical about non-materialism whilst sending their wives out to do the dirty deed of food-and-clothes-buying instead. But even women vicars, who by and large tend to be a lot more, you know, REALISTIC about the inevitability of needing to buy loo roll and kiddies' shoes, even they will probably shy away from PRAISING the LORD for shopping centres, let alone suggest a Christian should spend recreational time in one. They're kind of a necessary evil, like the Western banking system.
But you know what? Shopping centres rock if you have a child or two with additional needs. They are INSIDE, AWAY FROM TRAFFIC. You can walk from shop to shop without worrying that your kids will end up squashed tomato on the road. Also, they are contained spaces, so that if one does a runner you are pretty much able to catch him up whilst he is still in sight. I realised this in the UK, when our Social Services Family Link worker took us to the Old Trafford centre and I suddenly realised that actually, the kids and I could manage this on our own. It was also on that visit that I realised how pretty the centres could be, they have been designed to be impressive architecturally and (after months pent up inside) I enjoyed the hugeness of them, the vast sweep of shopfronts and the ant-like people scurrying through.
But New Zealand shopping malls are the best. They have free children's play areas. These are next to a food court, so that mum can grab a sneaky frozen coffee and look with lust at the bookshop across the way. I love'em. Of course, on a nice hot day I'd rather be outside. Even on a nice cool day I'd probably rather be outside. But on a rainy day, with three smallies? Gimme corporate roof-clad mall-Land. If it gives us a safe outing to an indoor playspace, I will quite happily worship at the altar of Mammon, or at the very least, the Warehouse. Just don't tell my vicar.
As a good liberal Christian, a hatred of shopping malls is practically an article of faith. I have lost count of the number of sermons I have heard filled with descriptions of these evil "secular cathedrals" "cathedrals to consumerism" "monuments to materialism" "Temple of Mammon" and other handy tropes. Jesus, I have been reliably assured on numerous ecclesiastical occasions, would be berating the poor till assistants in Farmers and the Warehouse, overturning their cash machines and laying about with a whip of cords, before nipping down to the local supermarket to do the same. I have tended to notice that women vicars very rarely preach this kind of sermon. This is probably because they are too busy, what with having to get the family shopping done on a tight schedule, unlike the male vicars of old who could afford the luxury of waxing lyrical about non-materialism whilst sending their wives out to do the dirty deed of food-and-clothes-buying instead. But even women vicars, who by and large tend to be a lot more, you know, REALISTIC about the inevitability of needing to buy loo roll and kiddies' shoes, even they will probably shy away from PRAISING the LORD for shopping centres, let alone suggest a Christian should spend recreational time in one. They're kind of a necessary evil, like the Western banking system.
But you know what? Shopping centres rock if you have a child or two with additional needs. They are INSIDE, AWAY FROM TRAFFIC. You can walk from shop to shop without worrying that your kids will end up squashed tomato on the road. Also, they are contained spaces, so that if one does a runner you are pretty much able to catch him up whilst he is still in sight. I realised this in the UK, when our Social Services Family Link worker took us to the Old Trafford centre and I suddenly realised that actually, the kids and I could manage this on our own. It was also on that visit that I realised how pretty the centres could be, they have been designed to be impressive architecturally and (after months pent up inside) I enjoyed the hugeness of them, the vast sweep of shopfronts and the ant-like people scurrying through.
But New Zealand shopping malls are the best. They have free children's play areas. These are next to a food court, so that mum can grab a sneaky frozen coffee and look with lust at the bookshop across the way. I love'em. Of course, on a nice hot day I'd rather be outside. Even on a nice cool day I'd probably rather be outside. But on a rainy day, with three smallies? Gimme corporate roof-clad mall-Land. If it gives us a safe outing to an indoor playspace, I will quite happily worship at the altar of Mammon, or at the very least, the Warehouse. Just don't tell my vicar.
Tuesday, March 27, 2012
Putting my clothes on inside out
Only Wednesday and already I feel wiped out. Today I had the CSS Disability Action lady. Who is lovely, and drinks tea, although I am a little uncertain about what exactly she does. She says it doesn't matter what we talk about. I think "well, surely it DOES at some level, because this is my time we are spending. I mean, if I want to talk amiable nonsense I can go to church anytime." (Note to self: must NOT repeat when I meet the Bishop). Gradually I am starting to see that what she does is know stuff: like where the best swimming school would be, or a fenced-in playground, or what holiday activities are on offer suitable for my kids. So this is good, certainly worth a monthly coffee. It's also going better than yesterday's mammoth meeting, which was two occupational therapists and a child developmental co-ordination worker. We spent two and a half hours drearily going through all the different ways in which my boys failed to make the grade, from social awareness to self-care skills like getting dressed. Just after they had gone I realised that I had put my own top on inside out, and spent two hours discussing my kids' delays with a label flapping on the back of my neck. Hmm, maybe that is why they asked so many family medical history questions. I can imagine them surreptiously discussing the case in the car "So...we need to work on self-care skills, should we start with the mother?"
I hope they're not planning to teach us anything, because I'm shattered by the combination of meetings, and in particular I feel wrung out emotionally by the boring, depressing job of ceaselessly reiterating my children's failings. I have heard in some distant universe of parents who bore about their kids' successes. I guess they are not the kind of parents who have three meetings in a week where people say cheerfully to you "Now, let's start with X, could you tell us where he's struggling?" It's particularly dispiriting because all of these meetings had sort of nebulous outcomes like "well thank you so much, we'll go away and discuss what he needs, and then we'll write a Plan."
The Plan is spoken of with such reverence that I start to feel a superstitious level of awe and anticipation at what it will contain. Clearly all our family's "ishoos" will be solved overnight by this magical piece of paper. I expect it will contain useful, attainable and practical targets such as
1. Ref: Child A and C. Cure autism, paying particular attention to social, sensory and behavioural problems.
2. Ref: Child B. Global Developmental Delay. Speed child up.
3. Ref: Mother. Teach her how to dress self. (Note: this target may be too ambitious)
Whilst we wait for this magical Plan to unfold, we do make some useful decisions. The OTs will start looking into specialist car seats for the younger ones and a referral to a urologist and Continence services. Which are not the kind of achievements I imagined myself getting excited about when I started this parenting lark, but heigh-ho. I am sure it is somewhere in the Plan.
I am hoping that this flurry of meetings settles down soon. I know I should be grateful, for all the help: I am, truly, but it is hard to see the wood for the trees when for the third time in two days someone says brightly to you "Can you just explain again why your boys are dangerous in public places?" So last night I took my eldest out at 6.45 pm, down to the beach. My reasoning was that I wanted to do something fun and uplifting and enjoy my children, remember why they were amazing. So down we went together. He got changed into his wetsuit and splashed in the sea. Then he drew pictures on the sand with his feet, and finally, with ten minutes to go before we needed to get home, we walked down to the end of the beach to show him the fossil forest that was left there 200 000 years ago, when a volcanic eruption solidified treetrunks to stone.
It's a moving sight, and brings me a sense of peace. I look across at the volcanic island across the bay, and feel a lot better: sort of back in the right place, somehow, as if the mountain and the water have settled my soul again, after the rufflings of the day. I must do this more often, I think. We walk back to the car. My son scampers beside me, first worrying that the crabs might bite his feet and then asking if he can crawl like a dog. I help him out of his wetsuit and into his clothes. And I am happy, simply and unproblematically so. The lists of professional meetings recede into the emotional distance. This is the right place to be, I think.
And that's what's useful about this marathon of meetings, I think, they enable me to suss out the local support landscape, so that we aren't pent up at home, but can get out and enjoy the view. That's my plan, anyway. Now if you will excuse me I will go and practice putting my T-shirt on the right way around.
I hope they're not planning to teach us anything, because I'm shattered by the combination of meetings, and in particular I feel wrung out emotionally by the boring, depressing job of ceaselessly reiterating my children's failings. I have heard in some distant universe of parents who bore about their kids' successes. I guess they are not the kind of parents who have three meetings in a week where people say cheerfully to you "Now, let's start with X, could you tell us where he's struggling?" It's particularly dispiriting because all of these meetings had sort of nebulous outcomes like "well thank you so much, we'll go away and discuss what he needs, and then we'll write a Plan."
The Plan is spoken of with such reverence that I start to feel a superstitious level of awe and anticipation at what it will contain. Clearly all our family's "ishoos" will be solved overnight by this magical piece of paper. I expect it will contain useful, attainable and practical targets such as
1. Ref: Child A and C. Cure autism, paying particular attention to social, sensory and behavioural problems.
2. Ref: Child B. Global Developmental Delay. Speed child up.
3. Ref: Mother. Teach her how to dress self. (Note: this target may be too ambitious)
Whilst we wait for this magical Plan to unfold, we do make some useful decisions. The OTs will start looking into specialist car seats for the younger ones and a referral to a urologist and Continence services. Which are not the kind of achievements I imagined myself getting excited about when I started this parenting lark, but heigh-ho. I am sure it is somewhere in the Plan.
I am hoping that this flurry of meetings settles down soon. I know I should be grateful, for all the help: I am, truly, but it is hard to see the wood for the trees when for the third time in two days someone says brightly to you "Can you just explain again why your boys are dangerous in public places?" So last night I took my eldest out at 6.45 pm, down to the beach. My reasoning was that I wanted to do something fun and uplifting and enjoy my children, remember why they were amazing. So down we went together. He got changed into his wetsuit and splashed in the sea. Then he drew pictures on the sand with his feet, and finally, with ten minutes to go before we needed to get home, we walked down to the end of the beach to show him the fossil forest that was left there 200 000 years ago, when a volcanic eruption solidified treetrunks to stone.
It's a moving sight, and brings me a sense of peace. I look across at the volcanic island across the bay, and feel a lot better: sort of back in the right place, somehow, as if the mountain and the water have settled my soul again, after the rufflings of the day. I must do this more often, I think. We walk back to the car. My son scampers beside me, first worrying that the crabs might bite his feet and then asking if he can crawl like a dog. I help him out of his wetsuit and into his clothes. And I am happy, simply and unproblematically so. The lists of professional meetings recede into the emotional distance. This is the right place to be, I think.
And that's what's useful about this marathon of meetings, I think, they enable me to suss out the local support landscape, so that we aren't pent up at home, but can get out and enjoy the view. That's my plan, anyway. Now if you will excuse me I will go and practice putting my T-shirt on the right way around.
Friday, March 23, 2012
But he only eats Marmite sandwiches: Children's books and one-track minds
We were at a disability freebie today, a day out at a petting farm. It was glorious. Not just the setting or the treat, but the relief of being surrounded by other families who were just like us. You didn't have to worry what other people thought about the meltdowns. As a delightful extra, lunch, we discovered on arrival, was thrown in for free. (I am just about to serve my packed-up ham sandwiches and hard-boiled eggs for dinner). My husband stood in line for the sausage sizzle (which is a Kiwi institution treated with reverent seriousness, I am half-expecting the New Zealand Masterchef programme to feature an episode where the contestants earnestly discuss the precise ratio of mustard and onions to ketchup and sliced white bread). Whilst I hissed at the servers "No Mustard. They won't eat it if it's got Mustard. Not even a tiny bit. Please, No Mustard," he got talking to the woman in front of him, whose son was going to eat his usual lunch: Marmite sandwiches. That's all he eats for lunch. And for dinner, three nights a week too. Suddenly the earthquake damage to the factory which makes New Zealand's Marmite became very serious. For the time being it was OK, she told him. She had put out an internet appeal and people from all over New Zealand were sending her supplies. She hoped she'd have enough to feed him that way until the factory was working again. Jeepers, and I was worrying about my children getting bored with too many cold burnt outdoor Kiwi sausages.
I've been lucky enough not to experience that level of food "jag," as they are known in the occupational therapy trade, but I can so sympathise about children getting stuck on a preferred, favourite, familiar thing. I hadn't realised how horrendous I had found the demand for the same book, or couple of books, for years on end , until I stumbled across this brilliant blog to which I am trying to link: http://www.blogger.com/img/blank.gif (look up www.thelittlewoodenhorse.blogspot.com if my linkage fails) It's another one on the Mumsnet network and I read it assiduously, although initially it made me madly jealous. Like seeing someone eating proper sausages indoors when I all I was getting was the ubiquitous Kiwi sizzle. You see, when I had my first child I KNEW he would be a booklover, just like me, who had refused to do anything BUT read as a child. I looked forward with eager anticipation to the reading we would do at the library together. When I started taking him, he fiddled obsessively with the computers in the corner of a room and barely registered that the rest of the library existed, other than a wail for a DVD as we left. Not quite what I was hoping for. He also hated being read to, except at bedtimes: and at bedtime would only want one story for months at a time, and would scream or refuse to co-operate if I read anything else. Everyone said it would pass, but it didn't It went on for years. I grew to loathe reading to him. And I felt depressed at the sight of picture books we couldn't share, the rows of shiny colours in the library that had to be for other children, never for him.
Gradually it improved, but I was by then too tired and stressed to think of picture books with any enjoyment, or to see evening reading as much more than an irritable chore. Then my second came along, and with his speech delay came a wild dislike of being read to, unless it was one of the Thomas books. Headbanging in his room, and the difficult of getting him to sleep without a tantrum and an attempt to throw himself down the stairs, meant that reading stories together went out of the window. A story at bedtime would guarantee an hour or so of screaming afterwards. Often I would have to stand outside his room, holding his door shut with both hands, whilst he howled and hurled his head against it repeatedly. (When we left the house, we found that he had banged dents in those great solid English walls beside his bed). Not worth the hassle.
I couldn't face even starting to read at bedtime to my youngest. This is me, with a Ph.D in English Literature, who couldn't get her nose out of a book during childhood. Even if I'd wanted to, it was impractical. The other boys' needs meant that I had to run upstairs, pop him in his cot and then dash straight downstairs again, before anything terrible happened in my absence. Oh, I did keep trying. I dragged them to the library occasionally. My eldest would cry if I made him choose anything other than a TV knock-off and my middle one would go systematically around the room throwing books off shelves. It was Purgatory. This dire pattern continued when we moved here. My first post on this blog was inspired by a terrible trip to our local library, when the librarian watched my children for a couple of minutes, took me to one side, kindly asked about Special Needs, and suggested I apply for some help.
By now my eldest had learnt to read, but was refusing to read any of the books that we gave him: they were chapter books, and although he could manage them perfectly he found them too scary. He kept stealing his brother's picture books, the ones that I was tentatively managing to read to him in bed for the first time. As I read the blog "The Little Wooden Horse," and envied the easy way books were shared in that house, an exciting thought suddenly hit me. OK, he wanted picture books. Well, he hadn't wanted them when he was younger. Maybe it was a stage he had missed out on. I wanted him to read chapter books for the entirely selfish reason that it would keep this hyper child occupied for a bit. But perhaps this was the wrong tack. Maybe instead of hurrying him along I needed to stop and let him enjoy picture books now.
I experimented, with starting to read a simple story to the two of them together. This worked. They both loved it. The younger one thought it was brilliant to do something with his elder brother, and the elder one loved the picture book. I loved it, too. The next week I took them to the library, and whilst the younger ones stood on their heads and screamed a lot, I told the oldest it was his job to choose a picture book for us all to read together.
We're doing it every week now. Sometimes more often. Even more often than taking them to a sausage sizzle and trying not to scream at the helpers that there to be is NO MUSTARD on anyone's bread. My eldest loves curling up in bed with the middle one, who is so excited to share a story with his big brother that he will let me read new material three or four times a week. I am suddenly getting a chance to dip in and out of picture books, with a child who is alert and keen, plus a younger brother who is adoring the sense of being read to. It is like a Renaissance. I haven't lost the chance to enjoy picture books, it has just happened later. I feel as if a door I shut several years ago is suddenly open, inviting, and my children are standing there, beckoning me. We are a story-reading family at last. Such a pure, glorious pleasure, like water in a desert, or sweets after Lent. There's something in that about Special Needs, and patience, and things being even more special when you have waited for them longer than the average. There are upsides to this whole additional needs business, even more so than the occasional free ticket to a petting farm.
I do hope that that woman gets enough Marmite to keep her son nourished and healthy until the Marmite factory starts work any again. And I hope even more that her boy gets to taste a wider range of foods, so that she tastes the sweetness of relief and enjoyment that I am experiencing about children's picture books, now. I just hope for her sake that he doesn't then get fixated on these blasted sausages in white bread.
I've been lucky enough not to experience that level of food "jag," as they are known in the occupational therapy trade, but I can so sympathise about children getting stuck on a preferred, favourite, familiar thing. I hadn't realised how horrendous I had found the demand for the same book, or couple of books, for years on end , until I stumbled across this brilliant blog to which I am trying to link: http://www.blogger.com/img/blank.gif (look up www.thelittlewoodenhorse.blogspot.com if my linkage fails) It's another one on the Mumsnet network and I read it assiduously, although initially it made me madly jealous. Like seeing someone eating proper sausages indoors when I all I was getting was the ubiquitous Kiwi sizzle. You see, when I had my first child I KNEW he would be a booklover, just like me, who had refused to do anything BUT read as a child. I looked forward with eager anticipation to the reading we would do at the library together. When I started taking him, he fiddled obsessively with the computers in the corner of a room and barely registered that the rest of the library existed, other than a wail for a DVD as we left. Not quite what I was hoping for. He also hated being read to, except at bedtimes: and at bedtime would only want one story for months at a time, and would scream or refuse to co-operate if I read anything else. Everyone said it would pass, but it didn't It went on for years. I grew to loathe reading to him. And I felt depressed at the sight of picture books we couldn't share, the rows of shiny colours in the library that had to be for other children, never for him.
Gradually it improved, but I was by then too tired and stressed to think of picture books with any enjoyment, or to see evening reading as much more than an irritable chore. Then my second came along, and with his speech delay came a wild dislike of being read to, unless it was one of the Thomas books. Headbanging in his room, and the difficult of getting him to sleep without a tantrum and an attempt to throw himself down the stairs, meant that reading stories together went out of the window. A story at bedtime would guarantee an hour or so of screaming afterwards. Often I would have to stand outside his room, holding his door shut with both hands, whilst he howled and hurled his head against it repeatedly. (When we left the house, we found that he had banged dents in those great solid English walls beside his bed). Not worth the hassle.
I couldn't face even starting to read at bedtime to my youngest. This is me, with a Ph.D in English Literature, who couldn't get her nose out of a book during childhood. Even if I'd wanted to, it was impractical. The other boys' needs meant that I had to run upstairs, pop him in his cot and then dash straight downstairs again, before anything terrible happened in my absence. Oh, I did keep trying. I dragged them to the library occasionally. My eldest would cry if I made him choose anything other than a TV knock-off and my middle one would go systematically around the room throwing books off shelves. It was Purgatory. This dire pattern continued when we moved here. My first post on this blog was inspired by a terrible trip to our local library, when the librarian watched my children for a couple of minutes, took me to one side, kindly asked about Special Needs, and suggested I apply for some help.
By now my eldest had learnt to read, but was refusing to read any of the books that we gave him: they were chapter books, and although he could manage them perfectly he found them too scary. He kept stealing his brother's picture books, the ones that I was tentatively managing to read to him in bed for the first time. As I read the blog "The Little Wooden Horse," and envied the easy way books were shared in that house, an exciting thought suddenly hit me. OK, he wanted picture books. Well, he hadn't wanted them when he was younger. Maybe it was a stage he had missed out on. I wanted him to read chapter books for the entirely selfish reason that it would keep this hyper child occupied for a bit. But perhaps this was the wrong tack. Maybe instead of hurrying him along I needed to stop and let him enjoy picture books now.
I experimented, with starting to read a simple story to the two of them together. This worked. They both loved it. The younger one thought it was brilliant to do something with his elder brother, and the elder one loved the picture book. I loved it, too. The next week I took them to the library, and whilst the younger ones stood on their heads and screamed a lot, I told the oldest it was his job to choose a picture book for us all to read together.
We're doing it every week now. Sometimes more often. Even more often than taking them to a sausage sizzle and trying not to scream at the helpers that there to be is NO MUSTARD on anyone's bread. My eldest loves curling up in bed with the middle one, who is so excited to share a story with his big brother that he will let me read new material three or four times a week. I am suddenly getting a chance to dip in and out of picture books, with a child who is alert and keen, plus a younger brother who is adoring the sense of being read to. It is like a Renaissance. I haven't lost the chance to enjoy picture books, it has just happened later. I feel as if a door I shut several years ago is suddenly open, inviting, and my children are standing there, beckoning me. We are a story-reading family at last. Such a pure, glorious pleasure, like water in a desert, or sweets after Lent. There's something in that about Special Needs, and patience, and things being even more special when you have waited for them longer than the average. There are upsides to this whole additional needs business, even more so than the occasional free ticket to a petting farm.
I do hope that that woman gets enough Marmite to keep her son nourished and healthy until the Marmite factory starts work any again. And I hope even more that her boy gets to taste a wider range of foods, so that she tastes the sweetness of relief and enjoyment that I am experiencing about children's picture books, now. I just hope for her sake that he doesn't then get fixated on these blasted sausages in white bread.
Wednesday, March 21, 2012
Why autism is not infectious, and Vegemite leaves a nasty taste in the mouth...
I know this because at our local music group there were vegemite sandwiches for the toddlers. "Ooh," I said in surprise, "I thought there was no Marmite left." "This is Vegemite," the mother standing next to me hissed, with the air of someone imparting a state secret. "Oh," I said, and took a sneaky bite. Quite nice, I thought, really rather palatable, until: "Oh Jee-no-don't-say-that-this-is-a-church-jeepers," I reeled, as the aftertaste hit me. A yeasty sour tang that made me feel more sympathetic than I have ever done to Hillary Clinton, who nearly caused a diplomatic incident on a visit to Australia when she asked why on earth one would want to ruin a perfectly good piece of toast with the stuff.
It was a lovely morning. I enjoy the group hugely, mainly the chatter, but am coming to enjoy the music part too. It's been quite some time since I've had an excuse to be a caterpillar and touch my hundred little toes. (Although I am still a mum, I can't sing about caterpillars going off to school without starting to wonder about how on earth you fund a hundred school shoes). Plus, my two kids - the toddler and the preschooler - behaved pretty well, on the whole. My toddler has realised, from watching my eldest last week, that you are meant to copy the actions and join in. He has fun, and so did I, even if my preschooler (who should've been at kindy, but I felt like bringing him instead) spent much of the session glued to my legs, shouting "carry, carry" and screaming until I wondered if the other mums would think he'd been traumatised by my negligently letting him watch the horror film of that name. But, you know, all good fun and that. We were doing pretty well at blending in, I thought. A NORMAL mum doing NORMAL things.
Then one of the elderly helpers made a beeline for me. She was the one, I noticed with some concern, who had wittered on at me about not getting this time again a couple of weeks ago (see previous rant). Now she had a concerned Responsible Citizen Challenging Errant Mother look on. "You brought your eldest son again," she said. "No," I said blithely, "this is my middle son." "Oh," she said. "I have been talking to some of the other ladies," she said, "and you know, you brought your oldest son to this group twice in the last term. And you know, we have decided, if he is off school, he can't come, because of the risk of infection, you know, he might infect the other children."
"Oh, don't worry about that," I said blithely, not recognising the subtext at all. "He wasn't ill either time. The first week I brought him, it was because he had been too stressed to sleep the night before. The second time, it was because he had spent half an hour screaming on top of the climbing frame at school, they couldn't get him down, and I thought a day off might settle him. I wouldn't bring an infectious child." I look at her face, expecting to see relief that I am not, after all, Evil Irresponsible Mother.
And then I see that she is crestfallen, slightly unhappy, searching for something else to say. As if she's still unhappy with my boy coming along, but hasn't found a reason to articulate, or at least one that she can share with me. And then I realise all of a sudden what this is REALLY about, and that she is casting around for what to say, because her first cunning approach has failed. Oh Lordy. The thing was, you see, that the first time I brought my eldest he was absolutely brilliantly behaved and I was really proud of him. The second time, he was so excited to come again that he was a bit hyper during the unstructured play time after the music had finished and couldn't/wouldn't/didn't stop throwing the soft balls around. Not ideal with smaller children. So I had already decided that I wouldn't bring him again, because he struggles to moderate himself when excited and I didn't want him to disrupt the group. Because to the best of my ability I try NOT to make my children a public problem. Because that's what irresponsible mothers do.
I could have explained all this, of course, put her mind at rest. But I was too hacked off. If only she'd had the courage to say what the problem REALLY was. She would have found I would have agreed completely, and had already decided to take steps to ensure it wouldn't happen again. But, instead, there was this slight duplicity. Like the Vegemite, it left a nasty taste in my mouth. A mixture of guilt, and irritation. I decide not to pursue the conversation, and leave with a smile on my face, terribly tempted though I am to wilfully misunderstand her and assure her that it's OK, autism and Aspergers aren't actually infectious.
It was a lovely morning. I enjoy the group hugely, mainly the chatter, but am coming to enjoy the music part too. It's been quite some time since I've had an excuse to be a caterpillar and touch my hundred little toes. (Although I am still a mum, I can't sing about caterpillars going off to school without starting to wonder about how on earth you fund a hundred school shoes). Plus, my two kids - the toddler and the preschooler - behaved pretty well, on the whole. My toddler has realised, from watching my eldest last week, that you are meant to copy the actions and join in. He has fun, and so did I, even if my preschooler (who should've been at kindy, but I felt like bringing him instead) spent much of the session glued to my legs, shouting "carry, carry" and screaming until I wondered if the other mums would think he'd been traumatised by my negligently letting him watch the horror film of that name. But, you know, all good fun and that. We were doing pretty well at blending in, I thought. A NORMAL mum doing NORMAL things.
Then one of the elderly helpers made a beeline for me. She was the one, I noticed with some concern, who had wittered on at me about not getting this time again a couple of weeks ago (see previous rant). Now she had a concerned Responsible Citizen Challenging Errant Mother look on. "You brought your eldest son again," she said. "No," I said blithely, "this is my middle son." "Oh," she said. "I have been talking to some of the other ladies," she said, "and you know, you brought your oldest son to this group twice in the last term. And you know, we have decided, if he is off school, he can't come, because of the risk of infection, you know, he might infect the other children."
"Oh, don't worry about that," I said blithely, not recognising the subtext at all. "He wasn't ill either time. The first week I brought him, it was because he had been too stressed to sleep the night before. The second time, it was because he had spent half an hour screaming on top of the climbing frame at school, they couldn't get him down, and I thought a day off might settle him. I wouldn't bring an infectious child." I look at her face, expecting to see relief that I am not, after all, Evil Irresponsible Mother.
And then I see that she is crestfallen, slightly unhappy, searching for something else to say. As if she's still unhappy with my boy coming along, but hasn't found a reason to articulate, or at least one that she can share with me. And then I realise all of a sudden what this is REALLY about, and that she is casting around for what to say, because her first cunning approach has failed. Oh Lordy. The thing was, you see, that the first time I brought my eldest he was absolutely brilliantly behaved and I was really proud of him. The second time, he was so excited to come again that he was a bit hyper during the unstructured play time after the music had finished and couldn't/wouldn't/didn't stop throwing the soft balls around. Not ideal with smaller children. So I had already decided that I wouldn't bring him again, because he struggles to moderate himself when excited and I didn't want him to disrupt the group. Because to the best of my ability I try NOT to make my children a public problem. Because that's what irresponsible mothers do.
I could have explained all this, of course, put her mind at rest. But I was too hacked off. If only she'd had the courage to say what the problem REALLY was. She would have found I would have agreed completely, and had already decided to take steps to ensure it wouldn't happen again. But, instead, there was this slight duplicity. Like the Vegemite, it left a nasty taste in my mouth. A mixture of guilt, and irritation. I decide not to pursue the conversation, and leave with a smile on my face, terribly tempted though I am to wilfully misunderstand her and assure her that it's OK, autism and Aspergers aren't actually infectious.
Tuesday, March 20, 2012
Because New Zealand Marmite tastes like vomit
Look, it does, all right? I will not brook any argument. The entirety of New Zealand may be in mourning for the New Zealand Marmite factory, unexpectedly shut this week after some earthquake damage, but believe me, they are dangerously deluded: it tastes revolting, and its absence from the nation's breakfast tables ought by rights to be celebrated as a chance to reclaim the national palate. New Zealand marmite really does taste like vomit. This is not a recent discovery of mine, but the first (of several) fundamental and passionate disagreements with my other half about food. He brought it back to England reverently, after our first trip here. I tasted it and spat it out. Clearly I was channelling my inner toddler because I've refused to have anything to do with the stuff since.
I am kind of wishing that I had done the same with my middle son's kindergarten, because it really hasn't been great, and I should probably have followed my initial instinct and pulled him out at the beginning.
I am kind of wishing that I had done the same with my middle son's kindergarten, because it really hasn't been great, and I should probably have followed my initial instinct and pulled him out at the beginning.
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